Expert: Mary Gordon - 12/7/2009

Question
QUESTION: My mother was diagnosed with dementia/Alzheimer in approx 2005.She recently stopped walking ,it was like we would get her up but she would say ouch like it hurt to walk.She also has rheumatoid arthritis so we thought maybe this was part of it.When she was walking she had began to walk with her head down.What do you think is going on?

ANSWER: Jannett,

It really sounds like what is happening is part of the progression of the disease. Alzheimer's affects all aspects of the nervous system, including muscular control and coordination - the loss of control is called apraxia. Not only do they start to lose the ability to coordinate their legs, they lose the ability to balance, which requires a lot of muscles working in delicate coordination. They may have the desire to walk, and the physical ability to do so in terms of muscle strength and ability to move their limbs, but they really can't make the movements and balance come together to to walk successfully - even though walking is so engrained as to be something we normally don't even have to think about.  

Another thing that happens is changes to depth perception. Their feet can seem very far away. They can't tell how high they are lifting their feet. So, they start to shuffle along, head down. They can start to lean too far forward or to the side. They get very wobbly. Quite often, it gets to be very frightening to them, and the risk of falling becomes enormous.

She may well be having joint or muscle pain as well - and because she won't understand the reason for the hurt, or why she might want to walk any more, I doubt there is any real way to change what has happened.

My mother in law had a fall in mid Alzheimer's - at that point, she was still walking, although she was very slow, she was shuffling along, and she tended to seem very weak (getting her up even a couple of steps was a challenge).

When she had her fall, she didn't trip over anything. She literally stood up from a chair, and without taking a single step, fell straight down as though someone cut a puppet's strings. Although it was onto a carpet, she broke a hip. It was repaired with surgery.

In theory, we should have been able to get her walking again. Her overall health was good, her muscles were not wasted, her legs worked, the bone was healed. However, she just couldn't cooperate. She was very unsteady and frightened, and no matter how we tried, we couldn't get her up on her feet again, even when we tried walking her between two adults. I don't think she had any idea of why she should even try or what we were trying to do. After months of trying with physiotherapists and nurses and aides and family, we had to throw in the towel. This was two full years before she passed away, and the rest of that time was spent in a wheelchair. Around the time she stopped being able to walk, she became completely incontinent, and within a few months, most of her intelligible speech was gone as well.

I had never really had any experience with Alzheimer's before my mother in law. No one in my own family ever had it. I hadn't realized that it causes global brain damage, and thus impacts everything that the brain controls.

Below my signature I've pasted the most commonly used descriptions of the final two stages, as developed by Dr. Barry Reisberg (sometimes these stages are call the FAST scale). Not everyone will lose abilities in exactly the same order, but you will see that eventually, the person will not be able to sit up on their own or even hold up their head.

It is extremely unlikely that you will be able to get your mother walking independently again. Once the ability goes, it's almost always gone for good. Even if you could get her up on her feet again, her condition would continue to deteriorate, and she would be at serious risk for falls if she was trying to walk alone.

I know this is heartbreaking and very hard to deal with.


Mary G.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently resent.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost (i.e. ability to walk)
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost

---------- FOLLOW-UP ----------

QUESTION: Thanks for response,Alzheimer is a terrible disease.Watching the slow decline in a love one is heartbreaking.Since my last question my mother is back on her feet with assistance.She now is having trouble with her bowels.She gets backed up.Her appetite is slowly declining.What can we do about this. Jannett

ANSWER: Hi Jannett, eating problems are also a common problem. By this stage, she will have lost a lot of her sense of smell - as well as her memory of what different smells are from, so food loses a lot of it's appeal. She won't smell the aroma of something delicious and get interested, and a lot of her sense of taste will be impacted. I think food becomes pretty unappealing. It's like eating so much tasteless cardboard. Quite often, they can still taste sweet well, which is why some people develop such a sweet tooth, even when they didn't have one previously.

They also don't seem to feel hunger or thirst like a healthy person - or if they feel those physical sensations, they don't connect them with the sight of food or drink, or the activity of eating. After all, you and I know what the feeling means, and want food. If you aren't making those cognitive connections, you might just do nothing and show no interest. Even dehydration is a big problem - they just aren't interested in enough fluids to keep healthy, another reason that UTIs are common. The kidneys and bladder aren't being flushed out enough.  

Another thing that happens is a result of the apraxia (that loss of muscular coordination that also impacts walking). They have trouble chewing, moving food around in their mouth, and swallowing. It's called dysphagia - and it's why the person usually needs softer and softer foods as the illness progresses, until they have to eat purrees, and also have thin liquids thickened (there are commercial products for this purpose). If you sense she is having any trouble with the mechanics of eating, you should have an assessment done by a speech pathologist ( believe it or not, they are the specialists who assess swallowing problems). Signs this may be happening include coughing, gagging and choking, chipmunking (holding food in the mouth and not swallowing it), spitting things out, a gurgly voice after eating, swallowing over and over etc. My mother in law would even eat peas and spit the skins out.  

As you probably know, they reach a certain point, and they have limited body fat to burn, so if they are not getting enough calories, their bodies start to consume their muscles, leading to even more weakness, so calories are a priority to prevent weight loss that trumps everything else (i.e. I'd be more worried about the weight loss than high cholesterol, for example, for their immediate health - since now is what they've got).

You will have to watch her and try different things to see what works. Here are some suggestions (although not all are going to necessarily apply to your mom).

- maintaining as much physical activity as you can for the person to stimulate appetite (having said that, if she is walking again, you don't want her pacing all day, since she may be burning more calories than she can take in). I doubt you are having this challenge, but sometimes it happens. It's a major reason for geri chair use - trying to stop the person from too much walking.

- providing regular meals and snacks that follow a routine (i.e. aiming for three meals and three snacks, for example),

- try more frequent smaller meals and snacks - sometimes that can keep the weight on better than larger meals three times a day

- keep her sitting up for a while after meals to make sure she's swallowed everything. If she is developing dysphagia, she is in danger of aspiration which can lead to pneumonia.

- eating with the person (seeing someone else eating can get them going as well),

- preparing familiar and favourite foods (whatever works - if there is a particular food they seem to love and will eat more of, let them have it!)

- think sideways about food. Just because it's breakfast time, doesn't mean they have to eat breakfast foods. Watch her, and if she will eat more at particular times of the day, let them have dinner foods then. Or if  she will eat nutritious custards or ice cream, let her have that. The point is to get calories into the person, as well as nutrients.

-  precut meat or finger foods as necessary if she can still feed herself, and make sure everything is a texture she can handle. Sometimes they have a real problem with mixed textures such as a crunchy cereal in milk. Consider trying things with smoother textures, or purrees and see if they work better for her. Again, the point isn't what might appeal to you or I, but what you can successfully get into her.  

- make sure there is no rushing around meal time. She is going to need a lot of extra time, whether she feeds herself, or has to be fed by hand.

- minimize distractions. My mother in law, for example, ate much more when she was in a quiet place. At the Alzheimer's ward, they started feeding her at a little card table on the ward rather than take her down to the bustling dining hall. In the dining hall, she tended to eat very little and it was becoming a big problem. We also found that staff would ask her if she was finished too soon, and she would say yes and they would take the plate away. So, all in all, she did much, much better away from distractions, just concentrating on eating.  

- let them get the food into themselves any way that works - for example, let them eat with their hands, or drink soup in a cup - whatever will work.

- you can add calories by adding butter or cream to foods.

- give the person utensils that are easy to hold (they make spoons etc. with big grips for people who have limited fine coordination),

- as coodination deteriorates, offer direct assistance (the person may need to be prompted to chew and swallow or actually fed)

- many choices of food on a plate can confuse an impaired person - try serving one part of the meal at a time

- consider vitamins or food supplements (i.e. Boost, Ensure etc.). Those fortified drinks should be offered as snacks or after she has eaten her meal, because they might kill her appetite for the meal itself.

- make every calorie count - if the person is drinking a lot of juice, it can kill their appetite for more nutritious fare. It is little better than sugar water.

- try and keep things calm, relaxed and pleasant at meal time, since many people will pick up on a tense atmosphere and it can make things worse.

Hope this helps. You might want to get a dietician to review her diet and see if there are ways to up her caloric intake. It helps to have a plan of attack laid out.

Hope this helps. Thinking of you!

Mary


---------- FOLLOW-UP ----------

QUESTION: Mary,my mom is in a stuck mode,since she came out of facility and went home with my sister,she was in a mode for 1 day wouldn't walk,eat or drink.Now she's been this way for the past 4 days.The progression is something I feel she may not come back out of this mode.I don't know what to do.We want to keep her at home as long as possible but it is really taking a toll.What can we do?Jannett

Answer
Hi Jannett, have you taken her to the doctor? Any time you have a sudden change like this, it's worth checking with the doctor to see if she might have an undiagnosed infection, like a urinary tract infection. Something as simple as that can really knock a person with advancing dementia for a loop.

It does sound like she may be in her final months - if you have access to hospice, I'd strongly advise you to discuss with her doctor about whether she qualifies and what is available where you live.

Hospice is a philosophy of care - and the goal is to enable your mom to be as comfortable, pain free and serene as possible, and to manage symptoms so that her remaining time is spent with dignity and compassion, surrounded by her loved ones.  Hospice care focuses on quality rather than length of life. Hospice care is family-centered care - it involves the person and the family in making decisions. Care is provided for the patient and family 24 hours a day, 7 days a week. Care can be given in various settings, including the patient's home, a hospital, nursing home, or private hospice facility - there are all kinds of programs out there. Most hospice care in the US is given in the home, with a family members acting as the main caregiver with supports. We found the physical, emotional and spiritual supports to be very compassionate, and it was as helpful to us as a family as it was to my mother in law.

This IS going to be very hard and very wearing, and you need all the help you can get. The first thing to do is to take her to the doctor and talk to him about her condition to see what she can potentially qualify for where you live.

http://www.nhpco.org/i4a/pages/index.cfm?pageid=4648&openpage=4648
http://www.hospicedirectory.org/

Hope this helps. Hang in there - there is help available to get you through this as a family. She is very lucky to have such caring daughters.

Mary G.